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A Banner Year for Travel

Sandy Schwarz

Doorway in a preserved part of the town of Xian

Everyone needs something that gets them excited, that makes their day and gives them a reason to live. Having a central line of some sort and being on parenteral nutrition (PN)—or having a tube and being on enteral nutrition (EN)—can put a kink into some of those passions or dreams. And having a disease or multiple diseases sometimes leads you to be a little more resourceful or slightly lower your expectations. BUT—the happiness one gets from an activity sometimes involves taking chances.

Fortunately or unfortunately, my lifelong interest has been traveling. Not the fancy type, but where you try to blend in and learn more about another culture. Thankfully those opportunities are practically endless. I should mention that I would probably be described as chronically ill—Crohn’s disease, colectomy, ileostomy, gastroparesis, separate PEG and J tubes, constant pain and nausea, etc. My doc tries to tell me I am fragile; I reply by totally ignoring that description. But you get the idea. I spend most of my time in a fetal position on my bed trying to work on my art when I can. Most everyone wonders how I manage to travel as much as I do and to where I do. My answer is adrenaline.

China

Beijing temple of Heaven Park

My most memorable year was probably 2010. (I should mention that we all thought that this was the safest time for me to travel to China and India since I would be on PN with extra boluses of fluid, and would have no need to drink or eat anything in either country.) At the start of the year, I had just returned from Kauai, Hawaii. A few days later I spent a month in Atlanta with a very close friend, who is also my travel buddy. During that visit we decided we would go to the Galapagos and Machu Picchu, Peru.

Just as we were on the phone to book the trip for about two months later, we saw news reports about torrential rains at Machu Picchu. The rains had washed away the train tracks and part of the trails. Needless to say, the trip was cancelled; it would be months before things would be fixed and it would be open to tourists again.

On to plan B. We surveyed the world and travel companies and decided on a trip to China. So with visas acquired, off we went to Beijing, Xian (site of the buried hidden sculpted army), and finally Shanghai. I loved the trip, but not the big tourist sites—the Great Wall, Tiananmen Square, Forbidden City, and so on. I loved the places a few blocks behind the hotels, and walking in the various neighborhoods in the cities we visited. I love interacting as much as possible without knowing more than three or four words—and a smile—and showing respect.

We found the hutongs—the old neighborhoods being torn down—very interesting and totally unlike other places people live. Apartment buildings are being built in those spaces and a whole new way of life is being forced on these people. We also loved the parks, watching and interacting a little with the people who were taking part in sports and games I had never seen. In the background, individuals and groups of people were playing various instruments—ones that are not played in this country, but the sounds of which blended into what we were seeing and experiencing.

Europe

After China I slept for six weeks—till the next trip. I scraped myself off my bed and on to England. Liverpool, to be exact. My aunt and many relatives live there. I have definitely been to Liverpool more often than anywhere else. We visited a friend in London for a week, then back to Liverpool and on to Germany, where we now have a number of friends, after a number of visits to one little spot in northern Bavaria. Eventually we made it back home to Seattle.

I slept a few more weeks. I was starting to feel a bit crummier, but I flew to Los Angeles to a friend’s house, where I slept for a few more days (Fourth of July now—views of the fireworks from high in the hills looking down on the Hollywood Bowl). We then drove to Point Reyes (San Francisco). We stayed a few days, drove back down to LA, and then flew home.

I spent the next three months in the fetal position getting sicker all the time. I was admitted to the hospital in September for five weeks, with endless docs trying to think of solutions, and was finally discharged with visiting nurses. Meanwhile, I was going ahead with year-long plans for a trip to India for the following December. It took me weeks to get up the nerve to tell my docs. Half thought I was crazy; the other half gave me the thumbs up and gave me ideas to help me.

India

Mudlarking on the Thames

1. How did you plan ahead to ensure that your PN and supplies would arrive safely overseas?

I carry all my supplies myself—no shipping by anyone. I carry on all my medications and a couple of days of PN with an ice pack or two, since I use freshly made PN at the beginning. Since I last traveled overseas, many airlines are only allowing one free checked bag. I find it very unfair since some equipment used for visually obvious disabilities are still free (wheelchairs, etc.). This change greatly increases the cost of traveling overseas. Hopefully airlines will understand the lack of options and the necessity for people on PN and EN to bring multiple heavy bags of life-sustaining, medically necessary bags with them. [Editor’s note: Some airlines will not charge for extra baggage containing medical supplies; we suggest you check with the individual airline regarding its policy.]

I did go to India for eighteen days. I went with my sister “Sherpa,” and my traveling buddy and her entire family, which is also my family. There were thirteen of us. I went with a slow-growing tunnel infection, so I was on antibiotics the whole time. We all caught a short Norwalk virus type thing. Being me, I got the sickest and it lasted the longest, but I didn’t have to get down a sip of fluids—ah, extra IVs! I was also dealing with low albumin and therefore very swollen feet and legs.

We split the trip into two parts. The first part was to the state of Kerala, which is in southern India on the western coast. It is lush green. Many different cultures have influenced it, and it is very interesting. While there, we went to Munnar, a high station where they grow tea and spices, then went on an overnight houseboat on the backwaters at Alleppey. It was very relaxing despite the heat.

After Kerala we flew to Gujarat—a state that is far west and north, and very different. It is the home region of my friend’s family. I loved seeing my other mom in her element in India. She and I have talked for over thirty years of getting me to India, so in many ways it was a victory for both of us. I found the whole trip fascinating and I don’t regret a thing.

The Future

I haven’t done any “real” traveling since then, due to my health. I’ve tried a few times within the country, but got sick each time. The last attempt was a year ago. But now my traveling buddy, my acupuncturist, and all my docs are on my case to make some travel plans. I am still not back at my baseline so I can’t decide where to go, but soon I will be on a plane somewhere. Croatia maybe? Or South Africa? My bed? Anyone have any ideas?

Several years ago I had stopped traveling for a while. I had had a bunch of surgeries and I sort of gave up the traveling stuff. I kept getting sick. I had multiple bouts of sepsis, tunnel infections, more sepsis with stranger bugs…. And all I was doing was lying on my bed. I then decided I can get sick anywhere at anytime and I wasn’t going to let that rule my life. I would rather live a life than wait for the next medical emergency to come along and guide it.

I now focus on being calm and open minded, and “going with the flow.” Stressing about relatively insignificant things will most likely ruin my trip—and my traveling companions’ trip. An interesting vacation has many ups and downs; the ability to smile and laugh about it later is the key.

Happy travels.

P.S. My next trip is to Turkey—at the end of next spring. I admit I am more nervous about this trip than any others, but I have a number of months to get this body (and mind) ready.

Questions & Answers on International Travel with Parenteral Nutrition

Thanks to Sandy Schwarz and Todd Friedman for this segment, much of which was published in Todd’s “Sweet TPN Times.” The questions are Todd’s, answers are Sandy’s.

1. How did you plan ahead to ensure that your PN and supplies would arrive safely overseas?
I carry all my supplies myself—no shipping by anyone. I carry on all my medications and a couple of days of PN with an ice pack or two, since I use freshly made PN at the beginning. Since I last traveled overseas, many airlines are only allowing one free checked bag. I find it very unfair since some equipment used for visually obvious disabilities are still free (wheelchairs, etc.). This change greatly increases the cost of traveling overseas. Hopefully airlines will understand the lack of options and the necessity for people on PN and EN to bring multiple heavy bags of life-sustaining, medically necessary bags with them. [Editor’s note: Some airlines will not charge for extra baggage containing medical supplies; we suggest you check with the individual airline regarding its policy.]

2. How do you ensure that your PN, supplies, and pump get through customs?
I have never had ANY problems, ever. I always have a few letters with me, one from my doc and the other from my home infusion division. I am always polite and calm, and carry my letters with me. I let them do whatever they want (there has never been anything outrageous, though full body scans DO confuse them). Also, at some airports there is now a separate line for security for families and people traveling with babies, wheelchairs, and carrying medical liquids. I have used that line about four times now in different cities. It lets you skip most of those endless lines.

3. Do you mix your own PN once you are at your destination?
I now use a product by Baxter called Clinimix or Clinimix E. It does not need refrigeration. It comes in a foil-like wrapper with a multichamber in the middle. You roll the bag, which breaks the seal and mixes the amino acid side with the dextrose side. It will never be exactly your formula, but if your medical provider thinks it is okay for a week or two—or longer—it is great. There are no lipids.

4. Have you encountered any challenges in keeping your PN cold?
This has not been applicable in the last few years. Before three years ago, we found ways to keep my PN cool—collapsible coolers or staying in rented apartments or other places with refrigeration. There are no ice machines in any place I have stayed outside this country (which shows my level of accommodations). It is easy to keep small vials of things like vitamins and other additives cold by being creative. Clothing is a great insulator, frozen peas work, and there are bags with chemicals that when combined become an ice pack (we’ve all used them in the hospital, etc.).

5. Did you get names of PN doctors in each country you visited in case of an emergency?
I get the names of hospitals, but I try to avoid them by bringing antibiotics and any other meds my doc and I have discussed. Sometimes I get evacuation insurance (like when I went to India), and have decided if I get really sick, I would get the next plane home. I also have e-mail and an iPod touch that I can use to Skype-call my docs, who give me their cell phone numbers.

6. What other challenges have you encountered overseas and how have you dealt with them?
Bring an extra pump and as many extra strong tall people (“sherpas”) as possible. Also, count, recount, have others count too, and go over all your supplies and meds as many times as you can and with as many people as you can. My biggest fear traveling is, did I bring enough of my meds? I am on a lot right now, and I use a spreadsheet to calculate how much for how many days.

One of the harder things to navigate is figuring out which and at what time to do your meds, depending on the number of meds and the time difference from your starting point. One of my current luxuries that solves many things is again that iPod touch (fourth generation). I borrowed one for China (good reception if you stand outside the premier lounge in Seoul). I could set multiple alarms for taking meds and hooking up, e-mail my doc, Skype-call my doc and family, carry copies of all my medical records, carry a detailed map—you get the idea. I am not a techie, but I am sure there are endless solutions out there these days.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.